Should I get checked?: Hi all - I am on... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Should I get checked?

UKWendy profile image
13 Replies

Hi all - I am on warfarin and have maintained around 2.5 INR for about 5 months now taking 6.5 milligrams a day. I woke up this morning feeling like I sprained my knee and my calf hurts but I don't know if that is because of my favouring my knee - should I go get checked for a DVT? Thoughts?

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UKWendy profile image
UKWendy
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13 Replies
Manofmendip profile image
Manofmendip

Hi Wendy

The simple answer is yes, asap.

who manages your APS? An INR of 2.5 is low for APS patients.

Best wishes.

Dave

UKWendy profile image
UKWendy in reply to Manofmendip

Hi Dave -

The team at St. Thomas' - the best there is - I agree I think I should be higher - I have an appointment with them Thursday morning so I will take it up with them then. All my symptoms have escalated - from hip pain, to breathlessness, joint pain in my hands and migraines and kidney pain. I have never had a "flare up" as some have talked about but I think this is one.

Best

wendy

Manofmendip profile image
Manofmendip in reply to UKWendy

Wendy

Please get to A & E, the breathlessness could be a PE, which is a medical emergency.

Dave

beccafullcircle profile image
beccafullcircle in reply to UKWendy

Hello

When I was first diagnosed the doctors insisted my blood remain at 2.5 level and I spent two years struggling

I now have approved for 3.5 and for a year now my body is overall working much much better. I even go up to 4.3 sometimes and find I function with less pains, heqdaches, joint pain, mind struggles etc when my blood is thinner. I take 7.5 ml daily of WaRfarin and fluid is my best friend along with a healrhy diet of fruits, fish, and no gluten. Hope this helps

Becca

MaryF profile image
MaryFAdministrator

Hi due to you being Warfarin, which I presume is due to a history of clotting, you must go and seek emergency medical advice as soon as possible, please as you do not wish to find out you have an untreated clot. Also breathlessness can be a sign of a PE. Please DO NOT hang about with this. MaryF

UKWendy profile image
UKWendy

The breathlessness is not occurring at this time - it happened for a short period of time a few weeks ago - as I am an asthmatic since birth I am not often sure where to attribute this symptom to - I am thinking I will head over to St. Thomas in about a half hour - you are worrying me....

UKWendy profile image
UKWendy in reply to UKWendy

Thank you all though :-)

Manofmendip profile image
Manofmendip in reply to UKWendy

Hi Wendy.

Sorry, I thought you meant breathlessness was happening now.

Let us know how you get on.

Dave

UKWendy profile image
UKWendy

I went a day early to the clinic and saw my specialist - no clot thank goodness and we chatted about my INR. They took blood and it was below 2. My gut says my range should be higher but my doctor doesn't think so. We will see. Thank you all for the support. Xx

Lure2 profile image
Lure2

I know you see a team at St Thomas. Has that doctor, who should be a Specialist of APS, told you that an INR of 2.0 - 3.0 (today under 2-0) is satisfactory as you have symptoms all the time.

You must insist on having higher INR or ask for a Heparin trial like APsnotFab suggested last time.

Take care!

Kerstin in Stockholm

anniesensi profile image
anniesensi in reply to Lure2

Agreed. I have had TIA's with an INR of 2.4, my target is 3-4, but my specialist and I are always happiest when my INR is nearer 4, or even slightly higher.

Interestingly, I had my first migraine since being anti coagulated a little while ago. I tested my INR and sure enough it was at 1.4! I have clexane in the house for whenever my INR dips below 3.0

I hope this is helpful x

anniesensi profile image
anniesensi

Definitely! You can't be too careful!

CormorantWatcher profile image
CormorantWatcher

Hi. New to the site tonight.

I never knew until today that there are two ranges normally applied to warfarin patients - 2-3 and 3-4. Which range your doctor puts you on will depend on your circumstances. I sometimes feel a little frustrated that I find stuff out like this by accident (despite being on warfarin for 8 years or so, aged 37 now).

I occasionally get the breathless sensation, I always get it checked. I'll say this: when I had my PEs it was a sharp pain on inhalation (same as when I broke my ribs playing rugby). The breathless I have had since a few times has just been like running out of breath. On the last two occasions I was walking to the doctors who it happened. He checked me, took INR and both times the INR was high. No idea why I got the feeling, but it subsided quickly - maybe I overexerted.

I am also anaemic and have been for a long time. While the docs attempt to get to the bottom of that, I often wonder if having anaemia and being on warfarin can be a strange mix - not enough iron and therefore oxygen in blood and make the blood thinner so it whizzes around quicker. Stupid explanation, but I do wonder if there is a link.

I had a calf pain recently too - when I had my first DVT, I had never experienced calf cramp, so that's what it felt like. The last time I had calf cramp (not having had it since the DVT) I was so worried I nearly took myself to A&E at 3 am! The cramping subsided and had gone by morning, INR checked the next day and fine. I thin it was just cramp and have to think that my warfarin has been effective.

Good luck with straightening it all out. My motto (I have to admit, mostly because my wife ensures it) is to get every medical worry checked ASAP - I don't want to be stubborn and "tough it out" and potentially make a medical situation worse. Equally it doesn't make you a hypochondriac...

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